Survivor But Not Fully Recovered: The Lived Experience After 1 Year of Surviving Sepsis

Hospital mortality rates related to sepsis have decreased over the last decade, increasing the number of survivors of sepsis who may experience long-term consequences. Yet, little is known about how they perceive their illness experience and its aftermath.

This study explores the experiences of sepsis survivors after 1 year of their index intensive care unit (ICU) stay.

This phenomenological study was guided by Merleau-Ponty's philosophy. Participants were adult patients admitted directly to the medical ICU with sepsis who had an ICU stay of at least 48 hours and had been discharged from their index ICU stay for at least 1 year. Participants were invited by letter to participate in face-to-face or telephone interviews and a brief survey. Interviews were audio recorded, transcribed verbatim, and verified. An interpretive group read transcripts aloud to increase rigor of identifying meaning units, existential grounds, and thematic structure.

Eight participants were recruited over 20 months. Participants were primarily white (87.5%) females (75%) with an age range of 37 to 74 years who were interviewed between 1 and 2 years following an index sepsis ICU stay. Five major themes emerged from the transcripts: (1) how they survived, (2) blurring of time versus counting time by events, (3) helpful help versus unhelpful help, (4) powerless versus striving for control, and (5) survivor but not fully recovered.

Findings reflected a long trajectory of chronic illness in which the index episode of sepsis was not necessarily what stood out as figural to participants. The meaning of participant experiences must be considered in the context of a health care system that offers little to no systematic follow-up care after sepsis and little prevention. Participants expressed a need for advocacy and follow-up support.